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The world obliges me to do something, so I create.
 Society wants me to belong, so I observe.
People force me to react, so I rebel.
They want me to stay still, so I paint.
Life requires me to live, but I am dying. . .

world mental health day 

10/10/2016

18 Comments

 
Picture
​CN: ableism, dehumanisation. ​

Today is world mental health day. 

​
I wanted to write a nice  and positive blog post about mental health, how important it is, how everyone matters and how harmful is not to take it seriously. But this morning I read a very upsetting article and decided to once again write about autism. 


​So I read supposedly inspiring and positive article about a mum of an autistic child who is struggling to express themselves (not my words) and how his diagnosis changed the whole life of this brave woman. In this article they also talked about how challenging her child is, and how strong and brave she is to put up with that. How she is an inspiration to all of us and so on. The end of the article was even worse, they claimed that having an autistic family member is a huge burden, how drastically it changes one's life and how they, on this, world mental health day, should firstly look after themselves, because they will never get appreciation or love back from their autistic family members. But seeing any smallest progress can brighten their day. (like you know, autistic people don't exist for their own reasons, but just to brighten someone else's day....) They said how sad and hard it is for her  to see her child being happy playing on their own with dinosaurs and having meltdowns while around other children. How she feels that this child will never love her and all they want to do is to share the facts about dinosaurs instead of more socially acceptable topics. And more ableist bullshit. 
Firstly I felt quite shocked, as i thought that we, as society, already moved away from the idea that autistic people are emotionless individuals, never expressing any kind of appreciation towards others... I also felt super angry as, like always, majority of articles written on the subject talk how hard is for people around autistics and how thankful we should be that they put up with us. This is so really helpful (oh, the sarcasm), especially when you already feel like everyone secretly hates you. Yeah right, thank you so much once again for telling me that my own existence is a tragedy and that I am the cause of everyone's pain...

I was also thinking why I rarely see articles about how hard is for autistic people to live in the world that does not want to accommodate our needs, in the world where we are expected to fit into someone else's agenda and most of the time no one even tells us what this agenda is. Be yourself they say. But this "be yourself" also has certain expectations attached. : / 

What is even more sad, that very often so called progressive people comply to the same agenda and while claim to be on autistic people's side, still adopt the very same dehumanising tactics. 
Do they even think how these articles affect mental health and well being of autistic people? All this made me to think more and more about such remarks towards neurodivergent folks and the bigger impact they have on our lives.
Growing up in neurotypical ableist world from a very young age we are socialised and “trained” to believe that there is only one way of being, only one way of doing things right. 
It is not acceptable to stim in public.
It is not acceptable to cry in public (there are exceptions to this though, like a funeral or tragic news).
It is not acceptable for an adult to carry toys around (unless they are acceptable type of toys).
It is not acceptable to seek sensory comfort in public places.
It is not acceptable to freak out in the crowds.
It is not acceptable  to lay on the ground if there are other people around.
It is not acceptable to hit your head into the wall.
It is not acceptable to wait hours for the bus that is not crowded, so others would not touch you by accident.
It is not acceptable to separate your food.
It is not acceptable to touch every object on your way to the bus stop.
The list could go on and on, every day there is a new rule of what is acceptable and what is not. What you are allowed to do and what not. Every rule has dozen exceptions and additional information that depends on the particular situation, environment, people involved and many other factors. You are not only expected to memorise them all, to create scripts for every single possibility, but also to act "naturally" and do not draw any attention to yourself.
It is exhausting. It is very exhausting. 
And if even a smallest detail goes wrong, we are reminded that by default it is always our own fault. 
I am wondering why these people don't write about this. Why don't they write that we should deconstruct the underlying assumption that we have to please others. Why don't they write how damaging for one's mental health is to grow in the world that every day keeps telling us that there is something wrong with us and that we are burden on society....
​
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I'm not saying that parents mental health is not important. Obviously it is. I am saying that to care about one group's mental health you do not need to harm other group. 
​
Copyright © Lex Kartanė
All rights reserved.
​
All works are copyrighted and not to be used without the permission of the author.
18 Comments
Joe
10/10/2016 07:43:05 pm

you are fighting the wrong fight. I love my son with autism, but I would give up everything to make him normal. While he seems as intelligent as everyone else, I know he will never be able to enjoy the same things as other his age children do. He dreams of having his own house, wife and different models of sport cars, will that ever happen? Of course not! He can't look into eyes of his age girls and shies away from them instead of flirting like other boys do. He still finds excuses not to buy milk when sent to the shop and breaks into tears if we spontaneously stop to grab some pizza on the way home. Is that the life you wish on your child? Yes I love him with all my heart, but i know that he will be a burden on me for the rest of his life. Same as every other child with autism on their parents.

Reply
mim.wood
10/10/2016 07:52:23 pm

Life in Britain in 2016 with a disabled child is bleak. It is a constant battle. Why do you deny the struggle of parents?
I also have a daughter on the spectrum. Recently she became aggressive towards me - now it is only me and she at home (our marriage too went the way of others. My son is thankfully now away at University) that I now there is no other help on hand at night for a parent of child with these issues. I have come so close to having police arrest her, she is that aggressive towards me. Respite appears to be a dirty word. The problem is due to all the funding cutbacks there is little or no help out there.

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Bruece
10/10/2016 07:59:58 pm

thank you for writting this. i often too feel very strange reading articles how autistic people are burden on society and it makes me wonder how hearing that again and again affects one's self esteem. it's good to know i am not the only one who worries this is the wrong approach.

Reply
Kat
10/10/2016 08:02:12 pm

Lex, i am sorry to see that the only two people who commented yet on your article obviously didnt understand at all what you are saying.reminds me of the people saying 'all lives matter'. Thanks for sharing your perspective which us imo totally valid and has to be heard! All the best, kat

Reply
Kari
10/10/2016 08:16:03 pm

I am a mother to an 8 year old son with Asperger. It seems that the biggest problem with the boy is that he wants things to be done his way. If not then he starts to be annoyed and aggressive. Many times finally I give up and let the boy do the things his way to avoid open conflict. But it's not a healthy parenting. Any change causes him panic. I know it is not his fault. It breaks my heart. I explain what is and is not acceptable behavior every time, but he still does it. When he is a teenager, I will not have even the physical strength to resist. We tried so many therapies, but they don't work on him, he is so stubborn.
Why don't you have sympathy for parents like me?

Reply
Eva link
10/10/2016 10:28:13 pm

Go to www.AspergerExperts.com
Danny is a wonderful source of help!

Reply
Anna
10/10/2016 11:03:38 pm

Dear Lex,

thank you for writing this! I completely agree with you and it totally strikes me how people have the audacity to comment about how hard it is to be a parent of an autistic child. These comments only justify what you've written. Also, they are totally ignorant about your feelings. You are one of the most wonderful people I've met so far: intelligent, courageous, creative and caring about other beings and their rights, plus doing activism. I don't see why you could be a burden and why you should face this kind of degrading comments on your own blog. Please let me know if there is any way how I can help and support you apart from showing solidarity.

And to Kari, Kat, mim.wood and Joe: If you had read this article properly you would have realised that Lex doesn't deny that parents' mental health is important. They are just pointing out how damaging this narrative is.
Lex is a human being and they have feelings. I bet they're hurt by what you've written - just like you would be if you were in their situation! Not what most people say about people on the spectrum. After all you're neurotypical. Neurotypicals (me included) always pride themselves to have empathy.
So, show some empathy and try to imagine what people on the spectrum are going through. Hint: Lex has explained some of this in their article. Read it. You're making it not only unnecessarily harder for people on the spectrum, but you're also reproducing the myth that people on the spectrum are unlovable. Because you know what message that sent to my younger self: when their own parents can't love them who shall? Fortunately I questioned this and so should you, because otherwise you're missing out on fantastic people like Lex.

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Shani
11/10/2016 04:28:45 am

To all those who think that people on the autistic spectrum cannot be loved: I am living proof that you are factually wrong.

Lex is the love of my life. My love for them is real and valid. The next time you find yourself thinking that people on the autism spectrum cannot be loved, just remember that you are wrong.

Reply
Gabriel
11/10/2016 09:55:05 am

how long are you together? how serious is it let me ask?
my husband was an aspie and very high-functioning, holding a highly paid job where he worked in near isolation. I used to work in speech-language pathology and had worked with Aspies and children with autism, so it was very glaring soon on in. But remember working with Aspies and having a relationship with one are two different things. The first, you get paid for. The second, you and only you end up making a lot of personal compromises.
Not everything is lovey dovey and butterflies, honeymoon passes and blunt reality meats you. People with asperger have huge barriers to empathy, and let me even say are incapable of emotional reciprocity. As a lover of a person on the spectrum you are subjected to experience ongoing psychological trauma.

And every attempt of an ex lover of an aspie to speak the truth is silenced. Autism activists don’t believe their loved ones suffer because of the conditions. They regard anything that does not portray autism in a positive light as false, just read this blog post again, that;s exactly how aspies tend to react! nothing they do or say is wrong! get ready to be the one always making mistakes, being wrong and having to compromise.

First with my now ex-husband everything seemed to be perfect, he was shy and different from other guys. He seemed to genuine be interested and ready to commit. We dated a couple of years before getting married, but even when I had big time social awkwardness. He nearly lost it with a waitperson just because she seated us at a table facing the sun. I mean, he got m-a-d.

Im the ery beginning I already noticed that he repeated what I said like the children that I worked with. “It’s got a green bag,” he would say, of a woman with a green purse. “She’s got a green bag,” I would correct him. “She’s got a green bag,” he would repeat. Very carefully, as he was storing that knowledge for future use. A neurotypical would have probably taken offense at being corrected, so it might seem as a plus. But then again again, a neurotypical wouldn’t have been communication disordered.

soon our marriage turned into disaster, like many other aspie-neurotypical relationships.

I shared this post in a post relationship support group and i hope they will take the time to share their stories with you. I know you don't hear much about this cruel reality, but believe me being with an aspie at its best feels like looking after another child or facing a psychopath destroying your life. Usually it's a mixture.

Reply
Verena
11/10/2016 01:04:27 pm

This comment makes me so angry! Are you aware that autistic people will read this and you tell them right in the face that they cannot be loved??! That they are actually traumatizing people who try and everything is their fault. Beside not being true, it's so damn fucking rude!! Do you also tell people with chronic depression, anxiety or other mental health issues that they are not lovable? How can you tell ANYONE that they're not loveable? Not sure who has the problem with the "socially acceptable behavior". And how you dare to speak of THE aspies. Like everyone on the spectrum (!) is exactly the same with the same behavior, problems etc. They are also fucking individuals! For example Lex is the complete opposite of your description of your ex.
And regarding the "difficult" situations you described. I don't see any problems there. The only problem is that you expected a autistic person to be and react like a neurotypical person (and of course even every neurotypical person reacts different). Why? You don't expect a wheelchair user to run up the stairs, don't you?

To sum it up: Learn some respect!

Henric C Jensen
11/10/2016 05:49:04 pm

What a crock of neurotypical bullshit, Gabriel!
I have been together with the same woman for 21 years, married for 17. We both have Aspergers. What you say "People with asperger have huge barriers to empathy, and let me even say are incapable of emotional reciprocity", is simply not true.
I was in several relationsship with neurotypical women before I met my wife. I loved them. I showed that I loved them. But... you know what, all they ever wanted was for me to change. The way I spoke, the way I dressed, the way I did household chores. The only physical intimacy they understood was sex. No hugging, no cuddles.
All that I missed in those relationsships, inluding love, acceptance, compassion, empathy, validation all that I finally got from the woman I married in 1999. And I know she she gets the same from me, because she tells me every day.
She never tried to change me, I never tried to change her - after all, why would either of us change what we love?
You know why it has worked for 21 years? Because very early in our relationship we comitted to 4 elements that are essential in a relationship
1. Committment
2. Communication
3. Compromise
4. Compassion
Those elements are the pillars of a good, healthy and strong marriage.
1. No matter what, we belong together
2. Communicate, talk, share - if it seems we are not 'getting what the other is saying' - try again, and again
and again until both have understood
3. There is always 'a third way', that lets both get something they want. It might not be along the lines of the original idea, but it is there, all it takes is willingness to accept that both will have to scrap their expectations on the original idea, because it is obviously not gonna work.
4. The other person is a human being with a past, with fears, angers, hang-ups, hurts, difficulties, desires and wishes. Those all come out every now and then. Some times they come out in a melt-down or shut-down, some times they make certain things a little harder, but if they are seen through compassion, through empathy and love, with the awareness of oneself as being the same in many ways, then those fears, angers, hang-ups, hurts, difficulties, desires and wishes can not only be overcome, but healed and cherished.
My guess after reading your comment, Gabriel, is that you went into the marriage thinking that you could change your husband, that with your help, nudging, pushing, nagging, demands, commands and ultimatums you could make him 'normal'. What you fell in love with, wanted to marry, build a family with etc was not the actual man, but your romanticized image of 'the husband'. Most people, especially neurotypical people, go into marriage like that. It is The Beauty & The Beast Syndrome - it is an extremely dangerous and dysfunctional way of looking at marriage.
It literally destroys people. Unfortunately it is also the acceptable neurotypical way of doing relationships.
It hurts both neurotypicals and neurodifferents. Neurotypicals because they think they have empathy, compassion and theory of mind, because that is what the neurotypical experts say neurodifferents does not have, and the neurotypical experts are always right.
I bet you never once cared enough about your husband to think of him in any other terms than how he could satisfy your needs, on your terms. I bet you never accomodated even one of his Aspie needs on his terms or even thought that you were supposed to.
I bet you are blaming the failure of your marriage on him - in fact I know you do -you told us so, and all because you do not have the empathy, compassion or theory of mind to think outside the box, beyond your romantic notions of what you think a marriage is.

Ketutar
11/10/2016 09:32:37 pm

I know my opinion about your opinion is not going to be appreciated by you, because I don't agree with you.

Your opinion is not new to me. Funnily though all of the similar opinions expressed were from a neuronormal girlfriend/wife...
There is this book written by Rudy Simone, "22 Things a Woman Must Know if She loves a Man with Asperger's Syndrome". You should read that book.

1) love is never a good enough reason to get married or even involved with someone, especially if you are neuronormal. You will have unrealistic expectations and misconceptions on how love works. If you love someone you do NOT want that person to change. If you do, then you DO NOT LOVE THAT PERSON. It really is as simple as that. You might want to love, and you might be in love in being in love, but that's not love. Which I expect even a neuronormal with limited intelligence and imagination to understand.

2) AUTISM IS A NEUROLOGICAL DIFFERENCE. Our brains are wired differently. WE CANNOT CHANGE. THIS is a FACT that should have been glaring. If there is someone who SHOULD be making compromises, it is the neuronormals, BECAUSE YOU ARE CAPABLE OF THAT. WE ARE NOT. There shouldn't be any need of compromises in a relationship.

Actually, autistic people are more sensitive and empathetic than neuronormal people. This is actually one of the reasons to why we so often build barriers and try to diminish or even stop the emotional input - we just can't handle it. So if your husband just goes on with his business as if nothing has happened while you are crying your heart out because of some issue or another, it's not because he doesn't care or have no empathy, it's because it hurts like hell and he tries to make the pain go away. We have a lifetime practice of this. We started as babies and already as children we are pretty good at shutting that out. And this is why so many neuronormals call us "incapable of love, affection and empathy". We are not giving you what you want, what you expect, what you would recognize as empathy and love, so you start pitying yourself.

The same with "loosing it" - you don't have the slightest compassion because you can't even imagine how PHYSICALLY PAINFUL the sensory input can be. You don't have an idea of what is going on in the head of your husband and why the situation becomes overpowering. And you are more concerned about what other people might be thinking of him, and consequently about you, that you need to be ashamed of your husband, an adult man acting like a kid...

No, I have no compassion to people like you. You have all the cards and you are not even bothering to play fair. Go find yourself a neuronormal idiot like yourself and leave your neurodifferent husband alone, he's better off without you. And forget anything about love, you don't love him and possibly never did.

The simple truth here is though that you chose to stay in a relationship with a man you feel is like a psychopath kid. It's your fault, not his.

PinkTexas
11/10/2016 05:03:46 pm

not everyone on spectrum is cruel and manipulative, everyone is different.
but in general they are not capable of love and affection, they think only about themselves, that's the main difference between us.

Reply
Ketutar
11/10/2016 09:05:17 pm

Oh, poor you... "they" are so horrible, making your life a living hell. Why can't the whole 100% of mankind be neuronormal, why oh why does there have to be these horrible neurodifferent 2%...
:-D

You are a special kind of stupid, aren't you?

MrsSam
11/10/2016 10:18:14 am

I have six children, the youngest three have ADHD and we expect a firm ASD diagnosis in the next 12 months (second SCAP assessment, consultant, school and CAMHS on board with diagnosis), DS 4 is 7 has epilepsy and is also being assessed for ASD, DD 2 is 2 and until last week (explanation further down) had bilateral sensorineural hearing loss and dairy allergy. In addition to this, DD 1 15 has recently been tested for dyslexia after breaking down at home and telling us she was struggling and had been for a long time. Dyslexia test said no to dyslexia but ed psych thinks ADHD or ASD is very likely.

Despite a wobble last year when I lost my dad I thought I was coping really well with the children's difficulties with the help of my husband and eldest boys (17 and 19), until last week.

Last week the school rang me on Monday to tell me DD1 most likely had ADHD or ASD and a battery of other tests were in the pipeline and can I come in for a meeting next week.

On Tuesday DD2 went for her regular hearing review with consultant, Speech therapy, teacher. If she doesn't have this then we were told almost certainly a procession problem, likely on the autism spectrum! I was devastated, now I am in turmoil thinking if all the behaviours we put down to her being troubled, which she still does even though it seems she can hear us at the moment! I thought I knew where I was with her, I knew the path we were in for her problems and felt in control.

On Wednesday the school rang about DS3, he had become aggressive in school to his teachers and has been getting increasingly distressed with things - the school has been amazing, they have never once failed to listen to me and are in constant contact with me. They have phoned his doctor (with permission) to expedite his ASD assessments so they can access more help for him. At the same time, over the last few months he has become really difficult outside, he runs in to the road at will and needs restraining and he bangs his head against the wall or floor when he has a melt down which really hurts himself, he also tries to open the car door when it is moving!!

I just feel like my head is going to explode! I haven't slept all night as DS3 wonders about the house at night and now I feel like swamped and on edge all the time. It's really affecting my health, I have had a run of hemoplegic migraines which quite frankly I don't have time for!

and you say parents of children on the spectrum are not brave? try this life yourself!

Reply
Joan
11/10/2016 05:01:37 pm

this is a very interesting discussion.
When i first started researching into aspies, i read all the positive traites about them why they are awesome why they are cool why we should accommodate to their disability, sure i get it, this applies in the work place/ in public.
but all these articles dont speak about is about being in a INTIMATE RELATIONSHIP with them, i think everyone that knows about the condition is compassionate and understanding except for one flaw, they dont actually know how it is to deal with them in a very personal setting every single day.
The outside world only see the weird quirky side to them the one aspies want to show, but we get to see the real trauma they cause on us. I feel as if these people are aliens in a human form, from a outside there just quirky and weird , but for anyone trying to have a meaningful relationship is like asking my cat to serve me breakfast.
Autism is a very serious affliction.
High functioning, low functioning, doesn't matter. What we need is empathy and they have none to give us.
I read more post by AIWS and it just confirms, it is ALWAYS be someone else's fault, like every aspie you play the victim.
Aspies cannot bear to look inside themselves, they are incapable of seeing anything negative about themselves, so it is turned on us. Where I get hung up, "are they really that blind to their actions" or are they in automatic defense mode 100% of the time, but with some degree of understanding their deficiency. Whatever the case, it doesn't change the fact that we live daily lives with a slow death sentence of our humanity.

Reply
Wunschdenker
12/10/2016 10:33:42 am

Damn it, these people lose their shit and are unable even to read the article to the end when it's focused not on their unimaginable horrendous life-destroying suffering (obvious sarcasm here). Though Lex clearly says that parents' mental health is important and "I am saying that to care about one group's mental health you do not need to harm other group." (citing here just in case someone will read it at least in the comments). And these people insist that it's neurodivergent people who are incapable of empathy, love and affection. From what I see here it looks like exactly neurotypicals are incapable of all these things. But I won't claim that because I have some general common sense and I'm neurotypical myself, who can empathize, love and feel affection - that's exactly why I agree with Lex on their point.

I'm so sorry that you have to deal with this bullshit, dear Lex. Please, never believe it.

Reply
Chad
16/10/2016 06:06:49 pm

More acceptance is needed. Being on the autism spectrum shouldn't mean a life of misunderstanding, judgment, or isolation.

Reply



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